Neutropenic again

Happy New Year!

It's about 10:45 pm on new year's eve and I am typing a blog at home. Yet more evidence to add to my nanna tally.

For the past three days Dave and my dad, with a few others along the way, have been working on putting in a new kitchen in our house. Our house is in disarray as the contents of the kitchen cupboards are distributed all over the front lounge. They have been doing an excellent job and are both well and truly stuffed. So Dave was happy to take it easy at home tonight which is good because it's probably best I don't mingle with people today seeing as my white blood cells have once again crashed out at 0.1. That makes me neutropenic again which means I have very few cells able to fight any sort of infection that might come my way. I will have another blood test on Saturday to see if the white blood cells have come back up. Last time they didn't make it back until the Sunday when I was in the Lyell McEwin.

Other than being at risk of infection, I am still feeling okay. I was nervous about getting up this morning as I was, irrationally, worried that things would go pear-shaped because that's what happened last time. It was all in my head and I am glad to have made it through the day.

I haven't really done anything for the last three days - just hung around at home and looked after the girls while the guys did kitchen things. I think I'll be doing much the same for the next couple of days. I'm afraid it's all rather boring.....

Praise the Lord

I have been meaning to update the prayer points on the side for a while but before I do I would like to point out that many of them have been answered.

• That I wouldn't be too anxious about Monday

I was not anxious about going back last Monday. I happily caught the bus in by myself and almost had a good time in the day centre as I received my drugs. Everything went very smoothly.

• For a good week before the next round starts

I perhaps didn't have a full good week prior to the second round, but I definitely had about four good days, which were a blessing.

• Patience with the girls
  

Despite Elsie being still quite clingy to me and Maesie being bossy and rude and recalcitrant and 3.75 y.o, I have been surprisingly patient and able to put up with them without losing it. I'm pretty sure there's more to this than my awesome parenting abilities (please note : joke).

• That I would have a good appetite and eat good food

I have had a good appetite and have been eating mostly normal food. I enjoyed Christmas food and haven't struggled to eat or with things tasting weird etc.

• For competent medical staff

The oncology nurses are lovely and they all know what they are doing. They don't make me feel nervous at all. Dr Giri knows what he is talking about and he seems to care what happens to me and he knows about my case. Chris (the clinical trials nurse) comes to visit me in the day centre most times I am there getting chemo, just to check that everything is okay. She is also available by phone to answer any of my questions and she calls to let me know my blood results, so I feel well cared for.

• For continued strength from the Lord

This one is being answered in many ways. I feel good, comfortable, happy (mostly), able to cope, firm in my faith, not afraid, peaceful etc. I'm fairly sure this is all provided by God.

• For healing

This one is hard to know and I wish I could tell. The only things I have to go by are that before treatment started, I had a pesky cough. I'm not sure what it was from, but possibly due to the mass in my chest bothering my lungs and associated tubing. I haven't had the cough since I started chemo. Also, there used to be a little nodule I could feel to the side of my neck and I can't feel it anymore. As for what's actually happening, I will have to wait until after Round 4 when I get scanned again.

So whether you have been praying or just thinking positively along these lines for me then I appreciate it and in the words of that pesky little Anakin Skywalker in Episode One "It's working!"

Bleomycin & vincristine #2

Today is Day 8 of Round 2. Dave and I headed into the RAH for a blood test and then waited for that to come back before they gave me my two IV bags. I think we were there for about 2.5 hours. My mum and dad had the girls and they were also looking after my sister's boys so the cousins had a lovely play.

My neutrophil result was 1 point something, which is better than the 0.71 it was for Day 8 Round 1. I will give myself a white cell booster injection tomorrow and then hope that I keep making white blood cells and don't get sick. Dave and I are both a bit nervous about the end of this week because it was the Thursday when things went pear-shaped last time. I am aiming to be doing less and staying away from people more so hopefully we will avoid a re-run of the Lyell McEwin.

Today there were a few younger people in the oncology day centre. One guy seemed to have heaps of big bags of IV to get through. I don't know what kind of cancer he had but he didn't have any hair and he was going to be there for a while. Next to us a guy came in for his first round. He was 30 and had testicular cancer. He was there with his wife and his cousin from Melbourne. His chemo sounded pretty full on - five days straight this week, then only Monday next week and then he starts over with five days straight again the week after. No breaks. That would be pretty crazy. He seemed quite distraught that he would lose his hair. He was Greek and just an ordinary guy. I almost suggested he read Lance Armstrong's book "It's not about the bike" because Lance had testicular cancer and treatment 5 days straight, but he didn't seem to be the reading type and plus, I really shouldn't have been listening....

The guy on the other side of me was also there for ages just reading his book. He had a permanent line in his arm. I think his name was Peter and I think he was a bit younger than me. There's just all sorts of people. Cancer doesn't care. Cancer doesn't pick people, it's just a bizarre chain of events in cellular mutation. Could happen to anyone - and does, it turns out.

Anyway, up until now, I am okay.

A merry chemo Christmas

Merry Christmas!!

I have had a good couple of fairly normal days. Yesterday I still felt well and even braved the shops at Gawler for a little while - a few groceries and a key Christmas present that turned out to be "Just what I wanted" for a three year old girl.

We headed out to church for a 7pm birthday celebration which was a lovely service. It was a tricky call though because we didn't get home till quite late and the girls went to sleep after 9 so Dave and I didn't get started on getting organised until after that. Unfortunately we ended up going to bed around 2am. Kind of silly when I'm supposed to be resting but I'll do that in a few days. My white cells aren't low yet....

This morning we all got organised in time to unwrap presents and get to church at 9am. It was another good celebration of Jesus' birth. After that it was over to Dave's parent's place. Presents, lunch, kids, Dora, nerf guns, carols and more. We're still there and will be for some time I'll wager.

To be honest, I don't really feel like I've had chemo this week. I am hoping that the drugs are still working hard at killing off the lymphoma and that it's just a bonus that I feel good. Hopefully tomorrow is another good day as we will be catching up with my folks, my sister's family, grandad and Judy.

Thanks to all those who have been thinking of me and hoping I will enjoy Christmas and praying I will feel well. I have had a great day, your prayers have been answered.

Sunday should be fairly normal I hope, followed by Monday with doses of bleomycin and vincristine. Tuesday I will jab myself in the gut with a white blood cell booster and after that the plan is to spend the next few days taking it very easy at home. Most likely in bed keeping up my fluids with the aim of avoiding another trip to hospital.

Hair, visiting and home

This round has been much different to the first one. I have felt much better, I have been eating much more. I have been on a different anti-nausea drug and I think it has made a great difference. I also think my body is now so used to having crazy drugs in it that getting another dose has not been such a shock. I also had a slight reduction in the dose of cyclophosphamide and etoposide (this is the one I get three days running), so perhaps that has contributed too.

What has been a shock though was the discovery last night of a very long hair growing from the top of David's ear. It was grey and about an inch long. He blamed me for not noticing it but it only became obvious after he had a haircut yesterday. He was quite troubled last night but is coming to terms with his old man hair growth.

Talking about hair, I am a bit annoyed that my leg hairs keep growing. I was looking forward to them falling out as a perk from this whole process. Maybe this cycle will put an end to them.

After I'd had my bag of cytotoxic medication this morning I was feeling quite well so Dave and I headed out to Tonkin (my very understanding workplace) in time to catch up with people over pizza breakup lunch. It was good to say hi to friends and colleagues and be back in the office, even if it was brief.

Following lunch it was out to Dave's folk's place to pick up the girls. We were greeted by two very cute, excited girls dressed up in Christmas clothes and one excited grandma (just in normal clothes). After a cup of tea and a catch up on what they'd been up to we headed home. We arrived to find that Travis the cleaning fairy had been and it was a pleasant surprise.

We keep receiving so many cards and messages and meals and gifts of all kinds we feel spoilt and truly blessed to be surrounded by generous, caring and loving friends and family. We are encouraged everyday by the grace and love of God, at many times expressed through people, and the many mercies He provides. I am looking forward to celebrating the birth of Christ over the next few days as it has a slightly new significance for me now. The hope and assurance I have through the birth, life, death and resurrection of Jesus means that whatever comes along I can face it without fear and rely on the One who suffered more than I ever will.

People and pills

I am currently sitting in McDonald's taking advantage of their free internet to post these blogs. Dave is having a coffee and there is a holiday feel. We are enjoying a few moments being childless in the city. Pity the next thing we have to do is head into the RAH for a bag of etoposide.

Getting chemo yesterday was kind of fun, in a weird sort of way. The nurses in the oncology day centre are so lovely. They are quirky and because patients keep coming back for their regular treatment, they get to know everyone and we get to know them. They were having a bit of banter and I participated, giving them a hard time. It is an interesting place. They know they are pumping toxic chemicals into you, but they do it well. I asked the nurse who was looking after me why she liked oncology and she said it was special to share in that time of people's lives. I'm pretty sure I couldn't do it but praise God that everyone is different and there are people who feel called to this area.

In contrast, while I was getting my IV mesna last night there was lady who came into the room who had been in hospital for a few days due to chemo she had a while ago. She had breast cancer and they had removed the lump but were giving her chemo as a precaution. I asked her what drugs she was given and she had no idea. "I just let them give me what I need". Yowsers lady, don't you want to know? How can you just let them pump you with stuff without knowing? People sure are different.

I am going quite well today so far. I ate breakfast. Drank some juice and tea and swallowed all my tablets. And I haven't been sick yet. This is better than last time.

My trusty pill box loaded with my post-breaky pills.

Round 2, day 1

Round two started yesterday. I had a fairly regular morning with the girls and Dave's mum at her place. I popped out for a blood test and then ended up leaving at around 12. I got a ride to Tea Tree Plaza and caught the bus into the city. I headed up to the oncology day centre and had my anti-sickness drugs prior to starting chemo. They gave me an extra drug this time, because I was sick last time. So far, so good.

I had a brief appointment with the doctor. I didn't really have any questions for him (surprising I know) and he didn't have a great deal to tell me. He told me he thought I ended up in hospital due to a virus. I'm not entirely convinced but I guess he knows about this kind of thing. Hopefully it won't happen this time. He seemed kind of excited that I'd lost my hair already. With ABVD (the usual treatment) people don't usually lose their hair until after four rounds or so. This BEACOPP business is more intense. I'm hoping it's worth it because ABVD sounds like a walk in the park.

After seeing the doctor, I settled into my comfy day centre chair to get my chemo. Three bags today and although they set the cyclophosphamide to go in slower to try and avoid a nasty sinus reaction, it didn't really work. My reaction was not as bad as before but I ended up having anti-histamine again. Such a bizarre way for a drug to affect someone....

While I was doing all this, Dave was picking up a new kitchen for our place. He met my dad and a couple of mates early in the morning and pulled out the kitchen, loaded it up and took it back to Gawler. Getting it all into our house will be a puzzle for another day but it brings with it a new oven, stove and rangehood and will be deep enough for a dishwasher, which will be very exciting, once it's all in.

Dave came to the RAH to pick me up and we went to mum and dad's unit in Black Forest, rather than all the way home. We waited for a while and then headed back to the RAH for another bag of mesna, the drug that prevents cyclophosphamide from wrecking my bladder. After that it was back to the unit where we stayed overnight.

I am feeling okay. Better than last time I think. I'll see how I go tomorrow morning because that's when I was sick last time too. It is nice to not have to worry about the girls and to just have a bit of time and space with Dave to just get treatment and do whatever needs to be done and feel whatever I feel and not have the pressure of caring for them. Those two girls definitely make this more complicated.

33% is unsatisfactory

Yesterday and today have been good days. I feel very close to normal, with the exceptions of no hair, a strange taste in my mouth - as if I have licked a stamp when I haven't, and a slight speech impediment which I can't explain.

Yesterday I did a few things at home while the girls were at child care. It was nice to be home without them. After we picked them up we went on a family shopping trip for a few Christmas presents and some groceries. It was only a short trip but it was quite tiring enough. After that it was home to feed the girls and then Dave and I managed to get to Body Balance in the evening (don't worry - we did organise someone to look after the girls). It was nice to be at the gym again doing a class, even if it was a fairly relaxed one.

After that it was home, tea and bed.

Today we had an easy start before dropping the girls with my folks and going to a wedding. It was good to be out, great to be able to make it to the wedding and nice to catch up with lots of friends who were there too. It was encouraging to have a few laughs with someone else who had cancer a while ago and to share some stories with someone who's been through similar things.

It's tricky though, going out and seeing people, because it's a bit hard to know what to talk about. I'm okay talking about what I'm going through and if people want to know then that's fine, but part of me would also like to talk about something else. That gets hard though because I don't really know what I'd rather talk about because there hasn't been much else going on in my life. So I'm a bit in a pickle. To be honest though, I kind of had a similar problem before all this anyway because my introverted nature doesn't really like random chit chat about nothing much.

I am assuming that I will feel good again tomorrow. We'll head to church and after that I'm not too sure. That will make it about 7 days out of 21 that I felt okay for this round, 33%. That's not really a pass mark in my book. Maybe the next cycle will be better if I don't end up in hospital and take it easier during the middle week, we shall see.

Lack lustre

There's not a great deal to report. I am feeling generally tired and weak. Fairly pathetic actually. I've mostly been at home taking it easy but still up and about. I'm not yet in bed or on the couch all day.

I had another blood test on Monday and the blood cell count was all good. But my potassium was low, probably as a result of getting fluids in hospital without added potassium. So I now have another tablet to take, Slow K, for a few days. Just one thing after another....

Yesterday Dave and I ventured into Melbourne Street for lunch. Dave caught up with a couple of his friends and I caught up with a couple of mine. It was nice to be out, but quite tiring.

Today is much of the same - just at home doing not a whole lot. It's quite frustrating and I fear it will be like this for the whole treatment time and maybe beyond. I think I need to work out things I can actually do, as well as get used to functioning at a lower level. It's particularly difficult with the girls though because there are always things to do with and/or for them.

It's a bit weird to think that it was Thursday last week that I had my little turn and ended up in hospital. A week goes by fairly fast. I just hope the next few months keep moving on too.

Last night I had a little sad moment. They happen occasionally, which I guess is to be expected. Well, they used to happen occasionally before all of this anyway so not a whole lot's changed - just what I'm sad about. It's much the same as previous posts - just that I've already had enough of this and I've only just started and it's hard and I don't want to have cancer anymore. It's just all a big steaming pile of poo. I'm also a bit anxious about Monday. I don't want to go through it all again. It's yucky and I don't like it. I just hope all the shitty bastard cancerous cells hate it more and die and piss off out of me. They aren't welcome.

The only way is up

I'm out! Yesterday morning the doctor took some blood and sent it off and then around 11 he came back to say he had some bad news - they had to kick me out because my neutrophils were up to 1.43 x 10^9 (1.8 x 10^9 is the normal lower limit). Waaahoo! I called mum and dad and they came by after church to pick me up. The timing couldn't have been much better because it meant that I was able to make it up to Humbug Scrub for lunch with the Lindsay side of the family - mum's two brothers and their families, many of which had come down from Queensland. It was a nice afternoon but a bit tiring.

Last night Dave shaved my head because I'd rather try and keep a step ahead and avoid having hair everywhere as it drops out. I'm okay with it all cut off. I've never been particularly fussed about my hair anyway so in a way if it's all gone, that's one less thing I have to bother with. It'll come back one day but for now I look a bit GI Jane-like.



It is nice to be back home today and have a bit more space and all my things and the internet and a real bed that isn't coated in plastic but in many ways it is more difficult. In hospital there are no jobs to do, you don't even have to think about eating - they just bring you food at the same times each day. There are no small children. It's easy to rest in hospital, it's going to be a bit trickier on the outside.

Today I need to go into Gawler and have another blood test and other than that we're taking it easy. Dave and the girls are having a pyjama day, I think I will get dressed for my blood test. Hopefully this week trundles on uneventfully and I recover more strength ready to start Round 2 next Monday.

A happy visit

Maesie and Dave came by for a visit this afternoon. It was good to see them. Maesie brought me a lollipop to help me feel better and she brought me a picture too. She really does seem to be taking it all in her stride, it is quite amazing the things that kids can adapt to. I think she has a reasonable understanding of what is going on and she mentioned to Dave that even though she was a bit sad about me being in hospital, sometimes you have to do things that you don't want to do. She's right on the money.

I had to wear a mask and it was a bit weird, but Dave and I did steal a kiss, even if it was lacking a little intimacy.

How low is low?

I thought perhaps it might be handy to put some numbers in here so that when I refer to a low white blood cell count, it makes more sense. I asked the doctor to print me off my last few results so I've got all the info.

White blood cells are expected to be within the range 4.00 – 11.0 x 10^9. On Wednesday my white blood cells clocked in a massive 0.05 x 10^9. That reading for white blood cells is too low for them to perform a differential analysis so I'm not sure of the neutrophil count vs lymphocytes etc. After a brief peak on Thursday with a reading of 0.12 x 10^9 my white blood cells were back down to 0.06 x 10^9 yesterday. I've had blood taken again today but I don't have the results for that yet. I am hoping it's getting better. It has to start going up one day.

In other news, my hair has started to come out. When I woke up this morning I was looking a bit Wolverine-ish with the sides of my hair sticking up and I thought I could do with a little bit of Wolverine-type healing factor. When I had my shower to settle down the crazy hair, I ended up with hair all over my hands. So it begins. All these chemicals have killed off my hair, they've killed off my white blood cells and they've messed up my mouth – I sincerely hope they have also hit the mark and killed off lots of cancerous cells too.

Surprisingly, I am reasonably happy in hospital at the moment. I have things to do and I am not feeling too cooped up and crazy. Praise the Lord for small mercies. I do marvel at the health system though. Sure it could be improved, sure there are some nurses that don't seem to care, sure the information isn't always the best and you have to wait a bit but really, how blessed am I to be in Australia where all these days in hospital are paid for by the country? And that I can access health care so easily. I know we pay for it through taxes but even so it is nice not to have to worry about having a massive bill at the end of a stay in hospital. So thanks everyone for paying your taxes.

The Hilton McEwin

It was a bit scary yesterday morning when I felt all wonky and weak. I wasn't sure what was going on or what to do. I guess I did the right thing by getting in to hospital and it's good to know it's not too bad once I get there. Just another piece of information in the chemo cycle.

I'm going okay in hospital and I'm not freaking out yet about being shut in a small room. I don't really miss the girls as such (what a terrible mother!) mostly because I know they would just wear me out but I am sad that their care has been falling to others. I guess it's a guilt thing and I'd better get over it because negative thoughts at this time aren't going to help me. I have bee thinking a bit about all of that – the influence of thoughts on the body. Thoughts and emotions are really only chemicals in the body, an amazing fact in itself. So I don't really want to add to the chemical mess that's already in my body.

The Hilton McEwin isn't too bad. The food is okay and I have a room with a view. A view of the carpark, but a view nonetheless. The nurses have mostly been good but there have been a couple that I'm just not convinced really want to look after people, a trait I would have thought important in this profession. I went outside for a few minutes today – down to the 'Peace Garden' with my facemask on – and it was good to go for a little wander and leave my room for a little while.

Dave is going okay. He had a good sleep last night and caught up with a couple of friends for breakfast this morning so he had a bit of a debrief about the latest events and I think he's much better for it.

It has been frustrating to realise that each day can change so quickly and that any plans we might make are merely an option if all else is going well. I am reminded of Proverbs 19:21 “Many are the plans in the mind of a man, but it is the purpose of the Lord that will stand.” It is hard to keep that in the balance with having some events or activities to give us something to look forward to.

For now I am still just trying to grow white blood cells. I wish my bone marrow would hurry up and get going because at the moment it is letting the team down.

Hospital is next.

On Wednesday night Dave stayed in hospital with Elsie and I was home with Maesie. We had been to the pre-school break-up where Maesie had eaten a whole lot of junk. At about 1:30 am she woke up with a sore tummy and after a few tries on the toilet and back and forth to bed, she eventually spewed at 3:00 am. I put her in the shower and cleaned her up and then cleaned everything else up and at last got back to bed at around 3:30. I wasn't feeling too bad, but it probably wasn't the best night for it.

Maesie called out at 7 and when I woke up I knew things weren't right with me. I made it down to Maesie's room, we both went to the toilet and then I headed straight to the phone to call an ambulance. I was sweaty and shaky and not all together steady. While I was on the phone I blacked out briefly and then found myself on the floor with Maesie telling me I dropped the phone and the ambulance people still on the other end. I answered all their questions, although I'm not sure I was making much sense. I told them I was on chemo and that I needed to get to the hospital. As I spoke to them from the floor I felt sligthly better and the guy said he either had lights and sirens to get me in 10 minutes or another one within the hour. I said I could probably wait, but I probably shouldn't have. I should have taken the lights and sirens. I hung up from them and then called Dave and when I told him what was going on, he said he'd come and get me. So I called back the ambulance to tell them Dave was coming.

Dave wasn't long and I kind of got myself organised crawling along on the floor. Maesie was pretty good. She was a bit worried but she didn't freak out and she quickly got ready once Dave came. We got into the car and headed down to the Lyell McEwin. Dave had called his mum earlier and she was there already, ready to take Maesie and she'd told them all my details. I waited for about 5 minutes, almost fainted off the chair but then they had a bed for me and we went through. They put an IV line in and started antibiotics pretty much straight away, according to the letter I had from the RAH.




I'm still not entirely sure what happened. I don't think I had an infection and I didn't really have a temperature but my blood pressure was really low (89/45) and it stayed low all day. It has come up a bit today and I am feeling okay. My white blood cell count is still really low so I am kicking back in the Lyell McEwin for the next few days while my bone marrow gets it's act together and cranks out the all-important white blood cells. I am in my own room because I am not allowed to be near sick people and when the nurses come in they have to put a gown, gloves and a mask on. The people bringing the food aren't allowed in. I feel a bit like a leper.

Elsie's hospital trip

I've heard from Dave and at the moment the doctor doesn't think Elsie has pneumonia. He thinks she has had some sort of asthma-ish reaction to a virus that may have something to do with her constipated guts. Beats me how that all works.

That means that she has been admitted for the night. Dave will stay with her and they will keep up fluids, ventolin and panadol for her. They also want to give her an enema. I'm glad that's one thing I haven't had to have.


I have no idea what that means for tomorrow or the rest of the week. It really is one day at a time around here....

What next?

Last night Elsie had a bad sleep and this morning she was not feeling too good. I took her to the doctor's this afternoon and he sent her down to the Lyell McEwin to check if she has pneumonia. Dave has taken her down there and I'm currently waiting to see what happens. It is a bit frustrating that this has come along now.

In addition to this, I had a blood test this morning and got a call from the clinical trials nurse to say that my white blood cell count is really low and that I should avoid all sick people (oh, you mean the toddler with possible pneumonia?). If I feel at all unwell or have a temperature 38 oC or more then I have to go straight to Emergency, do not pass go, give them a special letter and get pumped with antibiotics. So now I'm slightly on edge. Oh, do I feel unwell now? What about now? I think I'm okay, it's just freaking me out a bit.

So after I've typed this I intend to sit quite still on the couch for a while and will my bone marrow to form more white blood cells. I will also request some sovereign assistance along these lines.

Hold tight there, liver and bones

I probably should have added this yesterday but I got a call from the clinical trials nurse to say that my liver is fine, it's just reacting to the chemo. Yeah, no surprises considering all the junk it's had to process.

Today I had my injection of pegfilgrastin to boost my white blood cell count and that could result in bone pain as the bone marrow cranks up production. Splendid. At least it will feel like something is happening.

Other than the injection and my usual (although slightly diminished) array of tablets, today was fairly normal - actually quite good. I took Maesie and Elsie to the playgroup break-up this morning and then had some people round for lunch. Dave had a bit of time to himself at home while we were out and I think it was quite beneficial.

I have been struck again today at how this might not be a walk in the park at this point in time in my life but I am in no way the only one going through tough times. And others before me and after me have and will encounter difficulties. Life just isn't easy, and I'm not sure it's meant to be. It really is through the crappy times that things are defined and prioritised and there is great richness that comes through struggle.

Nothing is straight forward

Today is day 8 of my first chemo cycle. Before getting my chemo drugs, I had to have a blood test to make sure that my blood count was okay. That meant that we had to drop the girls off early with the family day care lady so that we could be in Adelaide at 9 to go to the IMVS. I had my test and then we had time to kill before I was due in the oncology day centre. We wandered down to David Jones and had a coffee. Once again, a very civilized thing to be doing in circumstances that just don't match.

Once we got to the treatment area we were told my white blood cell count was low. They called the clinical trials nurse who spoke to the doctor and they decided to go ahead with the treatment anyway because I am due to have an injection of white blood cell booster tomorrow. This was good news because we were getting a bit cranky thinking we might just have to go home.

So I was eventually started on my drips and was happily leafing through a trashy Women's Weekly when the clinical trials nurse came for a visit to say that some of my blood results showed strange liver function and that I had to have an ultrasound just to check that it was only a reaction to the chemo.

After getting into the treatment area just after 10, we eventually left about 12:30 (we just missed the lunch trolley too - bummer) and headed downstairs to radiography. There we were told that we would have to wait until two because they were flat out and short staffed. Even then, there was no guarantee that we would get in at 2. This was starting to get tricky because we needed to be back in Gawler at 3:15 to collect the girls. Just as we were discussing our options and trying to decide whether to stay or try the Lyell McEwin or just me stay and then get a ride home with someone, one of the ladies came out to say another patient had to wait for a doctor and they could fit me in straight away.

I had my ultrasound and we left, getting back to Gawler with enough time for a short break before picking up a few groceries prior to collecting the youngsters.

We went in thinking we'd be heading home before midday but hadn't even completed treatment by then. It was long and draining to be having changes presented all along. We are beginning to see that treatment days should just be made clear with no other commitments because we never know what is coming next.

I have had a bit of a grizzle at home this evening - just being annoyed about having cancer and upset that there is still so much ahead. But it didn't last for long and I still feel that whatever comes along the Lord will grant me the grace, peace and strength to work through it. So far He's been managing quite well.

Two new friends

Tomorrow I head back to the RAH to have a dose of vincristine and bleomycin.

Vincristine is another interesting drug - it is derived from the periwinkle plant! It prevents cells from dividing by binding to tubulin. The main side effects of this drug are sensory changes. Apparently I may lose sensation in the tips of my fingers and toes. I'm not sure what I think about that one - it'll probably be a bit frustrating but hopefully not too nasty.

Bleomycin messes with cells through degradation of preformed DNA. It can however cause pulmonary fibrosis which is harm to the tissues of the lungs. Excellent.

I am glad to be getting this treatment and to be receiving all these drugs that are killing the cells that are not welcome, but it is hard to cop them all knowing that they hurt the healthy parts of me too. I know cancer treatment has come a long way already but if those clever sciency types could work out how to direct the drugs to the cancer cells that'd be ace. I'm sure they're working on it.....

I have been feeling quite good for the last few days and have been enjoying normal family activities. I use the term 'enjoying' loosely because two of the activities this weekend were Christmas shopping at Lizzy and Maesie's dance break-up party. It's been good to be able to do regular things such as Body Balance on Friday and church this morning. I'm not sure how long it will all last but we shall see. I am pretty tired tonight though.

My dear David is a bit fried. He's tired but not really sleepy tired. He's just worn out and a lot of it is emotional. He showed great restraint in the shops today by not screaming at dim-wits who just stop in the middle of the mall walkway, but it took more effort than it otherwise should. It has been a bit tricky with the girls too because it is harder to muster the patience required, particularly at the end of the day when they are tired too.

Now, no pressure, but some people have offered to provide us with meals and other help. If you were wondering how to go about sorting that out, Jasmyn Nicholls has generously offered to work that out for us. So if you contact her by emailling : jazzynicholls at gmail dot com (except write it out like a real email address - it's just like that here to prevent spam and other dodgy things) she will be able to point you in the right direction.

Other than that, your support in reading this, praying, messages, comments etc mean just as much. I definately feel surrounded by many caring and loving people. It spins me out a bit to think that it probably numbers in the hundreds and not just in Adelaide but in Australia and also far reaching parts of the world.

I'll let you know how I go tomorrow. Maybe I'll get more yoghurt.....

A taste of normal

Three posts in one day is a bit extreme but I just thought I would jot down that I am feeling considerably more normal this afternoon/evening.

We went out a bit today. We went to a friend's place to return some dishes that had been brought to us full of food (Thanks). The girls had a good little play and we had a nice chat. I was still a bit spacey, but getting better.

We went home and all had a bit of lunch. It was al a carte at lunch with everyone having something different but I managed to cram down a bit of salad.

I had a lie down after lunch and when I got up was feeling a bit better so when Elsie woke up we all headed to the playground for a little while. That went well and was followed by a trip to Coles for some icecream. I even ate a little bit of that. Amazing.

Back home for a while and I got a few things done before heading off to dancing with Maesie. I drove the car all by myself, something I haven't done since Monday. It was nice.

So in the end, a normal-ish kind of day, which is very encouraging. I have more tablets to take for the next 3 days till we go back to the RAH for another couple of IV drugs on Monday.

What to do?

I dont' know what I want to do. I don't feel like eating. I don't feel like having a rest. I don't feel like reading. I don't feel like watching tv. No one mentioned this would happen.

Plus, I have some weird smirk that I can't stop doing with my mouth. Not sure if it's a side effect or just something I have developed in reaction to all the things I don't feel like doing.

Bizarre. And crap.

When you feel good on the inside, or not

For your viewing pleasure I have included some photographs.

These are from Monday, the first day of chemo.

It turns out I should not have worn green because I was already looking pasty and the green didn't help.

They feed you while you are there, especially if you are there at about 12:20. The lovely Lavender Ladies (and Lads) bring the food around. They are troopers in the RAH. All volunteers. So here I am enjoying some icecream.



This next photo is something I found amusing as I sat there feeling crap and about to be pumped with stuff to make me feel crapper. It says "When you feel good on the inside, it shows". Well when you feel crap on the inside, it shows too, Vaalia.


Here are the chemo drugs all set to be hung up and pumped into me.


I had my third lot of etoposide yesterday. I'm not feeling too bad today but just a bit weird. I just don't feel normal and it is a bit frustrating. My eyes aren't quite normal, my nose isn't quite normal and my guts aren't quite normal. It is annoying.

Maybe tomorrow will be better?

Another boring update

There's not a great deal to write today. Dave and I went back to the RAH today and I got a dose of etoposide IV. It didn't take too long and they gave me a bit of fluid too because I had been a bit sick. I got some other drugs to prevent nausea and so far have been better with that.

I also received a jab in the guts to improve part of my blood - I think it was white blood cells.

I have been feeling a little down this evening. Just that it's only just started and I've had enough already and will things ever be normal again and it's all a bit scary and blah blah blah. I rest in the Lord though and I do know that He will provide the strength required each day.

Back to the RAH one more time tomorrow and then not again till next Monday.

A sparse update

I feel I am a walking body of chemicals. A slow walking body of chemicals. The treatment went okay today. The nurse was great.

I consumed over a dozen tablets for all sorts of different things, as well as getting drugs intravenously.

I'm tired, but that's not new. I feel a bit off, but my body isn't used to getting so many chemicals. I spewed once, which was most unglamorous but I'm not generally glamorous anyway so that's okay.

No interesting observations for today.

All I want for Christmas is a pill-box

It has come to my attention that in my previous post stating things had been cleared up and I would be receiving BEACOPP, I didn't include when that was going to start. It will indeed commence tomorrow, Monday the 30th November. So Monday to Wednesday this week I will go to the RAH, then again next Monday. Then wait/recover for 13 days till Monday 21st and get slogged again.

Tomorrow I will receive doxorubicin (our swivel preventing friend) and cyclophosphamide (related to mustard gas) by intravenous infusion. I will also get a dose of etoposide intravenously. I will get etoposide on Tuesday and Wednesday as well. Etoposide is exciting. It is derived from mandrake root and its mode of action is not clearly known. Oh. That's a comfort. They know this kills cells but are just not quite sure how. I feel I am entering medieval times.

I will also start taking procarbazine and prednisone tablets tomorrow. Procarbazine inhibits the synthesis of DNA and RNA so cells can't divide and I'll take that for 7 days. Prednisone is a corticosteroid and I will need to ask exactly what this is for.

I will also be given a drug called mesna to prevent the inflammation of the bladder that cyclophosphamide may cause. And allopurinol to assist my body to clear the destroyed cells. And pegfilgrastim to aid in the recovery of my white blood cells. Lucky Maesie has told me she will give me a lollypop and a glass of water because I think I'm going to need them.

I'm going to have to take all this to the chemist and ask them to make me one of those press out packs so that I don't get in a muddle. Or maybe I'll just buy one of those pill boxes with the days of the week. My nanna-ish tendancies are about to hit all time heights.

Noisy streets

Yesterday Dave and I met with the consultant, Dr Giri, and Chris the clinical trials nurse. It was a helpful meeting and Dr Giri answered all of the questions I had written on my list. I signed up for the trial, had a blood test and an ECG then wandered up to Rundle Street for lunch. We went to Cafe Michael 2 and I had green chicken curry. It was delicious, as I already knew it to be.

Lunch was very normal which is one of the strange things about all this - most things trundle on normally around me, but I have malignant lymph nodes inside me. But it makes me think about what secrets other people have as they go about their business in the street. Perhaps not even secrets necessarily, but just not things that you share with strangers when really what you'd like to do is yell it out so people stop being normal and acknowledge something's going on. "Don't you know my mum just died?" "I just found out I'm pregnant" "I failed my exam" "My husband left me". It would make for a noisy street and would test those empathetic amongst us.

Some time in the afternoon, Chris rang to tell us that the randomisation process for the trial determined that I will receive the BEACOPP treatment. This is the one that I had been told about back at the start, but now all the mess has all been cleared up. There are seven drugs in the cocktail, as I listed in a previous post. I need to go in to the RAH on days 1-3 & 8 of the treatment cycle to receive the drugs intravenously and there are pills to take at home on other days. The cycles will take 21 days and there will be 8 of them.

I am comfortable being part of a trial. I've done a few in my time although testing the results of different mouthwashes on plaque is a bit different to cancer treatment. Being part of the trial will mean that I get careful attention and I think I will see more of Dr Giri rather than his underlings which, at this point in time, suits me fine. Plus it'll just be interesting.

Couldn't organise a piss-up in a brewery...

Well the prayers of the people have been answered today. I have not been affected by the chemo at all - because I didn't get any. It is a long story....

We had dropped the girls at grandma's and were on our way into the city with plans to get a few things done before my 12:30 appointment at the RAH. In the car, I received a call to say that I wouldn't be getting chemo today because they wanted to work out a few things regarding the trial before I started. She asked me if I had read the information sheet and I told her that the info had been emailed to me but that the attachment was corrupt and although I had replied to let the doctor know that, I hadn't received anything further. We arranged to meet at the hospital so she could give me the information sheet and talk things through.

Until this point, we had been working on what the doctor had told us back on the 16th - I would be getting a treatment called BEACOPP that required attendance at the RAH for eight days straight, followed by 13 rest days. I had prepared myself for that to start today.

When we spoke to the clinical trials nurse who was very helpful (a meeting which, incidentally, occurred in the corridor of the oncology clinic because there weren't any available rooms), we found out that what I had actually been booked in for today was a treatment called ABVD which is the standard treatment in Australia for Hodgkin's lymphoma at stage 3. The trial that they had asked me about participating in is looking at comparing the ABVD treatment with the BEACOPP treatment which is more common in Europe. If I choose to participate in the trial I may get allocated to BEACOPP treatment or I may get ABVD. If I don't go in the trial it is simply ABVD, you can't choose to have BEACOPP.

In addition to this news, we also found out that for BEACOPP treatment I would only need to attend the hospital on days 1-3 and then again on day 8. All the other drugs are pills I can take at home. For ABVD I need only rock up at the RAH on days 1 and 15 of a 28 day cycle. That's a hell of a lot different to eight days straight kids.

So, all in all it's been a bit of a balls up and we're a bit annoyed about it all, well, quite annoyed. It's just frustrating. We'd sorted the girls out, we'd told people what was going on, we'd prepared ourselves mentally and now we have to take a step back, think it all through again and come up with a new plan. All the while the months ahead remain unknown and difficult to plan for.

At this stage, and I really hope it doesn't change again otherwise David is going to clearly verbalise his frustrations to the hospital staff, I have an appointment with the consultant on Friday at 11 am. I will ask any other questions and let them know whether I will be part of the study or not. On Monday I will head to the RAH again to start treatment of some form (AVBD or BEACOPP) at 11:30 am.

Until now the RAH has been very good but this has spoiled things a little.

Poison running through my veins

Starting tomorrow I will be heading to the RAH to receive nasty chemicals in order to kill the cancer cells. Pity it'll wreak havoc on all sorts of other cells inside me. Usually if someone ingests poison you have to ring the helpline and go to the hospital so they can remove or reduce the effects of said poison. This will be the opposite. I will rock up tomorrow feeling fairly well and they will dose me up with a range of 'medicine' and likely feel ill once its done. At the moment I am set to receive 5 goodies tomorrow - doxorubicin, cyclophosphamide, etoposide, procarbazine and prednisolone.

In order to understand the artillery, I have dug out my pharmacology book from a box in the shed. You know those enzymes I mentioned a while back? Well, doxorubicin prevents one particular enzyme (topoisomerase II) from doing its job. Usually this enzyme helps the replicating DNA to swivel so it doesn't get tangled. Doxorubicin stuffs up the swivel and seizes up the cell replication. Voila, dead cancer cells. Brilliant. Pity dear old doxo can't tell the difference between cancer cells and every other cell that might be dividing at the time. This one has the unwanted effects of nausea and vomitting, hair loss and myelosuppression. Great.

Cyclophosphamide is a nitrogen mustard and is related to 'mustard gas' used during the War. This just gets better. This one has a pronounced effect on lymphocytes. Good, its the lymphocytes causing all the problems.

More about these another time.

As for me, I am mostly going okay. I have been a little upset today because its all a bit real and this treatment is going to mean that my troubles impact the lives of others and I don't like to be a bother. Now before you all comment to say I'm not a bother, part of me does know this to be true and that people are happy to help because they love and care for me, Dave and the girls. I do know this. If it were any of my friends or family I would do the same. But another part of me thinks its just a terrible inconvenience for all involved. And I suppose it is, but I guess I can't decide who chooses to be involved and that's not my problem to deal with.

It's just a swollen gland

This all started when I felt unwell during the first weekend of September. I was tired and achy and flu-like but without the stuffy head, sore throat and phlegm. I felt along my neck because that seems to be what doctors and mothers do when one is ill and since I am a mother now I thought I'd give it a go. Lucky I did. I felt a firm lump at the base of one side of my neck and had a look at it in the mirror and it was visible, which I didn't think it should be.

So I made an appointment to see the doctor. I couldn't see the doctor I usually go to, but I got in to see my 'back-up doctor'. He thought it was probably a virus. He sent me for blood tests. He rang me later that day to say my iron was low and that I should start taking iron tablets. Ok. Easy.

The lump seemed to go up and down a bit but maybe that's because I just kept poking it. On the 16th of September (Wednesday) I did the corporate cup after work, a 4.5 km run around the picturesque Torrens Lake. I struggled along and it was a bit of an effort to finish. Dave did the run with me and when we'd finished we went back to his parent's place for tea. During tea, about an hour after running, I had a little turn. My lips went blue, I was cold, I had the shakes. It was a bit strange.

After that little episode, Dave wasn't going to let me do the City to Bay the following Saturday and he made me go to the doctor again. I said let's not be hasty because I really wanted to do the run. I got in to see my usual doctor and she said there didn't seem to be any definite reason for my turn - just a mixture of things like low iron, low blood sugar etc. She said she wouldn't rule out doing the City to Bay but just to be aware that I could have a similar turn. She told me to make another appointment for the following week in case I needed it and to cancel it if I felt okay.

That was enough for me. I told Dave I'd see how I felt on the Saturday before the run and I'd decide then. We decided to do it. I was going to run with my sister (and Dave) which I was pretty pumped about. She was seven weeks pregnant and I had lymphoma and we got to the end running pretty much the whole way (it's 12 k's). Dave made it to the end too.

I ended up going back to see the doctor for the appointment I'd already made, not because I was still feeling ill but because I needed a prescription I usually have and had run out of. So I went, told her the run was fine and that I was feeling okay but that the lump was still there a bit. No worries.

Things kept going in their normal fashion. We went camping on the last weekend in September when it was freezing and rainy and windy. I cooked for a conference at Victor Harbor over the October long weekend. I went to work, took Maesie to dance practise, went to playgroup - the usual stuff.

But things still were not quite right. I still felt quite tired and lethargic, but what parent doesn't? I had sore shoulders, but I always hunch over. I still had a lump at the base of my neck, but it wasn't as big as before. Then some little things happened and I added them to my list. I had leg cramps one morning and I'd never had them before. I was occasionally aware of my heart/lungs. It's a bit hard to explain. I know they're in there but usually I don't feel them do their job but I had a few niggles, not really pains, that just weren't quite right.

Back to the doctor with my list. That was 5.5 weeks after I first felt unwell. She didn't really like the fact that my lump was still there and I had a list of strange things going on. She sent me for a chest x-ray, an ultrasound of my neck and a fine needle aspirate of the lump. The appointment for all that was 9 days after I saw the doctor, a Thursday. I headed down to the hospital and had the ultrasound first. During that I found out there was more than just one lump in my neck. The fine needle biopsy was okay. It looked like a snake had bitten my neck.

On Friday my doctor rang me to make sure I had an appointment soon - I had one for the following Tuesday. I asked her what it could be and that was the first time the 'L' word was mentioned. I asked what else - "Some kind of virus". On Monday evening my doctor rang again to tell me that there were abnormal cells in the biopsy and that she had organised some things to 'fast-track' the process. She had made an appointment for me to see a surgeon on the Tuesday afternoon and then if he agreed it was necessary, to have surgery to remove the lump in my neck on Wednesday. She also told me she would have to refer me on to a specialist. Things were getting interesting.

Anyway, to wrap it up, I had the lump removed, the results came back to say Hodgkin's Lymphoma and then I moved into the land of a million tests and started to become familiar with the RAH. My life is no longer what it used to be.

The body is a marvel

For a long time I have admired the human body. Not in a dodgy way, in a geeky scientific way. In Yr 13 I did biology for a bit of fun. At uni I did science as well as engineering, mostly for fun. I did biochemistry and pharmacology in third year and the more I have learnt about the way the body works, the more I have been amazed that more things don't go wrong with it.

Do you know there are sequences in cells that are triggered by a molecule attaching to a receptor on the outside of the cell? The molecule is on the outside, the receptor passes the message through the cell membrane to another protein, an enzyme, and then that one passes it to another and then another - sometimes 10 different proteins can be involved to just pass one message through. If one of those proteins is even the tiniest bit altered, it won't work properly. You're stuffed. But it DOESN'T. In millions of cells, enzyme cascades work just the way they should thousands of times over. Amazing.

Do you know that the enzymes have to be made and all they really are is carbon, hydrogen, oxygen, nitrogen and a few others - all those elements you learnt in high school chemistry? It's just that all the parts have to be in exactly the right order, made of the right amino acids, because they twist up on themselves depending on the charge of the molecule to make the right shapes and charges to interact with other proteins and molecules. Incredible.

A cancer cell is one which has just broken out of the system. The normal controls are no longer there. Cells usually know when they bump into neighbours and they stop. Cancer cells barge on through. Cells usually get old and get tidied up and recycled at the right time. Cancer cells keep on keeping on. You only need one cell to have the tiniest of changes to its DNA and it's forever altered and no longer fits in the finely balanced system that is the human body. I remember being intrigued when learning about cancer because it really is quite interesting. Now I have my practical and I am still finding it interesting.

In Psalm 139:14 King David wrote "I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well." I too praise the Lord because I am fearfully and wonderfully made, despite a few renegade cells.

Here's the rub

We journeyed through the maze of the Royal Adelaide Hospital this morning to attend the cancer clinic on level 7 of the East Wing. The doctor was a lady a little bit shorter than me and a little bit older than me (I'm guessing about the age). She had all my results - my heart function is fine, my lungs are what they would expect (a bit below average due to the low haemaglobin) and my bone marrow is okay. All of this was good to hear.

Not so good was the list of all the nodes highlighted by the PET scan. There's quite a number - in my neck, across my shoulders, in my chest, around my heart and a couple have snuck down to the groin. This all means I am classed as having Stage 3 Hodgkin's. I was expecting Stage 2 so the upgrade was an unpleasant bonus.

My new friend then launched into the impending regime. She wanted to start it this week but I requested a few days grace so that I can see Maesie through her dance concert. It would have been the perfect excuse to skip out of the concert, and I was tempted, but I thought it best I see dance through to the end.

Starting some time next week I will head to the RAH every day for 8 days to be dosed up with a cocktail of poisons; some featuring only on one day, others get a guernsey everyday. I will then have 13 days to recover before repeating the process. The first set will have 6 rounds. In addition to these I will have to take a drug to help my body process all the cellular junk that will be left in the wake of the cell-destroyers. My two little kidneys weren't made to process all of that....

Then there's a couple of other tablets I'm supposed to take twice a day for the whole time (I can't quite remember what these were - I will fill this gap later) and blood tests twice a week. I need to have a thermometer at home and if I feel a bit unwell and my temperature is above 38 oC then I need to go straight to emergency. If it isn't above 38 then just to the GP for antibiotics. No worries. I love the doctor. I love taking tablets. I love hospitals.

I never thought much about the lymph system...

It is with some trepidation I begin this blog. I realise it doesn't take much for a blog to fall below par however, for the following reasons I will give it a try:
1. for me, just to have a go
2. for those who know me and may wish to follow the interesting (or not so interesting) times ahead
3. for those who don't know me but might find themselves in a similar predicament.

So, it turns out I have Hodgkin's Lymphoma. I found out a couple of weeks ago and since then have enjoyed a CT scan, a bone marrow biopsy, a PET scan, a lung function test and a gated blood pool scan (heart function). A bit of discomfort, a few cups of watered down concrete to drink but all in all, not too bad. Tomorrow I visit the haematologist for my results and the proposed treatment.

Lymphomas are cancers of the lymph system. The lymph system plays a vital part in looking after your blood and in your immunity. There are lymph nodes in many parts of the body, the main ones being the neck, armpits, centre of the chest and the groin. Your spleen also plays a part in all of this too. For some reason, possibly a virus, cells in a lymph node freak out and decide not to play by the rules of the body and hey presto, a cancer.

If you were going to choose a lymphoma, I guess you'd take Hodgkin's. For one, it has a name - all the others are just lumped together as non-Hodgkin's. Another good reason to pick this one is that Deltra Goodrem had it and she's lovely so surely it can't be that bad :) Lastly, it is quite treatable and the chances of getting rid of it are good.

So, I'll see how I go with the blog and I'll see how I go with the lymphoma!